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Terminal Restlessness UPDATE
Jim has "Terminal Restlessness" that keeps him moving, jerking, seeing people and things and restless. Anyone have experience with this. I looked it up on line. I know I shouldn't but I never heard of this before and wanted to know. The oncologist added Haldon which helped some but he still could not be still so they…
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tongue swelling
OK..we are experiencing tongue swelling...anyone have any rememdies for that? Almost thru the third week of rads... thanks Ya'll!!!
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Questions on brothers neck dissection - update
Hey everyone ! I am going to ask those of you with experience with staples after surgery what to expect for my brother. I had stitches...so a bit different. He read the surgical report to me and it sounds not so good. He won't hear about the final pathology for a few days yet. They removed 3 tumors from the left side of…
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Mucoepidermoid carcinoma Low Grade - Require Radiation?
Dear All, My wife is diagonised with mucoepidermoid carcinoma @ Hard palate last Nov 2013. She had undergone surgery and the pathology report has come as LOW GRADE. Post operation report comes as the tumor was removed with all the margins clear. Our Oncologist now giving us two option for further treatment, 1. Let to…
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magnesium deficiency from Erbitux
With only one more tx to go, they have decided that I have a magnesium deficiency from the Erbitux. They put me on a perscription and I was thinking a week or so but it had 60 pills and several refills. Did anyone else experience this? If so, how long were you on meds? Why can't I just eat some (creamed) spinach or…
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3rd week of radiation and chemo combo
well..my hunny is on his third week of radiation and so far so good...starting to have trouble swallowing but as long as he keeps ice and water going in all day...its doable right now..hope it continues to be manageable...thank you all for your help and tips...Lysine has helped keep his acid level down..and glutamine has…
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Update on Susan
Many of you have helped my friend Susan, by sending scarves,hats to help her on her journey with breast cancer. Today, I'm so thrilled to tell you..no more chemo, she is suffering with neruopathy in her hands and feet, and the Drs decided not to go on with chemo. Next week she goes to talk about radiation, there may be a…
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Branchial Cystt or SCC
Hello. I am new to this but have messaged some great people who have really been helpful. I am 47 and from Liverpool UK. I have a submandibular neck lump. It is either SCC or a branchial cyst.It is being removed Monday and will have a biopsy whilst in out. If it is cancer I will wake up with a neck dissection. I have two…
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Newbie of tongue cancer
I was diagnosed with T2 tongue cancer right before Christmas. For the first month all the doctors I saw were saying radiation and possible chemo, which the next Dr I saw said I didn't need. Then after a series of events, mainly me getting the flu and having to postpone all the appts I had made. I had to see yet another new…
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Mandibular resecting
I was treated for MEC BOT early in 2009 and have been declared NED on every scan since fall 2009. That's the good (hell, wonderful!) news. The bad news is that I've more than my share of side effects over the years. The most serious of them is ORN, which has progressed to me needing my left jaw bone replaced with a bone…
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The journey is moving on
The hospice nurse came yesterday as Jim got more and more restless and started twitching a lot. Jim's oncologist and nurse happened to be on call. Added Haldoron, not sure of spelling, which took until this morning around 11 am to help so I was up most of night. Finally fell asleep some where after 4 am untill 8:30 am. He…
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Bilateral Vocal Cord Paralysis
Both my vocal cords are stuck closed. Pretty frustrated. I got through my rad/chem in Aug 2013, good Petscan in November. I had cancer of the larynx. First my ENT wouldn't take out my trache because of swelling. That went down but still had a restricted airway. He sent me to Vanderbilt (5hr drive) to see if they would…
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2 years out since last recurrance and NED!!!
Just wanted to share this with everyone. My mom went through total of 2 recurrances with total of 4 surgeries plus 6 biopsies combined and radiation since Nov of 2010. If you read her profile you will see that beast kept hanging on for quite sometime. Whenever I researched the prognosis after recurrance it made me so…
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Un-Remarkable...
And I kind of thought of myself as pretty remarkable... I started this journey as many of you... January 5th, 2009... diagnosed STGIII SCC Tonsils HPV+. Sixteen weeks of four types of chemo, seven concurrent with 35 daily rads sessions, bolted to a table and receiving daily injections of Amifosrine in my stomach each…
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need more prayer
Please pray for Jim to be peaceful and relax. Very unsettled this morning. He can't seem to relax. Gave him small dose of Ativan. Afraid to give him more because the last time I gave him full dose he went in opposite direction and was very agitated. Please pray for his peace and that he can relax. Debbie
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Update...
Hi everyone! Sorry for being absent for so long. I felt I needed some time away from the site as I was fighting through some of my recovery issues. I lost 60 lbs total and now I have gained 5 lbs back in the last two weeks. Wednesday I got the results from my first PET scan and I was given the all clear - phew! I wish all…
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Adenoid Cystic Carcinoma
Just started my journey of survival. Head is spinning, so many things being said, and what do you mean I am the topic. Feeling lost and uncertain.
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Got to meet Lorna
Happy to say that I got to meet Lorna yesterday. She had an appt. with the ONC where I was getting my chemo. Such a pleasure to meet. I didn't recognize her without her motorcycle helmet :-)
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Been missing for a while
I've been away from the boards for awhile - not with any health issue - but working on our move We moved to Florida!!! Out of the bitter cold and snow of upstate NY to the sun and warmth of central Florida! We're still settling in, so much to unpack and put away plus waiting for the various utilities to connect. We finally…
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Bummer
We have been trying to go fishing together all week, Just us two and Tebow of course, but the weather wouldn't cooperate. Today is perfect for fishing. Jim was excited this morning but we had to wait until 12:30 because Tebow had an appointment then. Was getting things ready when my mother called about coming to sit with…
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tounge flap stich
Wondering about those that when a graph was used to form the tounge flap if it was stiched in?I have noticed that I have one and now since talking more and eating more it seems I can feel the the stich now move around.Is that normal and it will disappear like a normal one and nothing to worry about?
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Here's a curious question about eating
Hi guys have a curious question that me and my speach specialist were talking about.While she is mostly right now teaching me the new way to eat we were talking about spoons and forks.Every spoon and fork bends upward towards roof of mouth we were wondering if they make anything that bends down the other way to make it…
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Latest Update on Friend's Husband
Hi all: The lastest with Steve is rads going well. They saw reg. onc. Tuesday and Beki was a little discouraged as he didn't seem as optimistic as rad. onc. She had not mentioned a time thing until then and told me rad. onc. had said 6 mo-2yrs and reg. onc. was more on the lesser side of that timeline. However Steve cooked…
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CHECKING IN 19 MONTHS OUT
3 MONTH APPT WITH ENT TODAY, ALL CLEAR!! He said everything looks good, just need to make it 5 more months to my 2 year mark and my risk will drop way down. Taste is still coming and going. Still do not taste sweets. Saliva is so so, still taking Salagen. Thyroid levels are dropping but still in the "normal" range. But I…
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planned maintenance on CSN this morning
Planned maintenance will be done on CSN this morning between 5:00 and 8:00 Eastern Time. There may be one or more outages during this time. We apologize for the inconvenience. Greta
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Hello Mr. Ned Again
Friends, Had my eleven and half month checkup since completing treatment (MD said hell lets just call it your first year checkup) and all was clear and clean. Had CT and scope (which I just love!!!). MD very pleased with progress and healing --- will see again in four months. Will just need to have physical exam and chest…
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VIMEO Video of the mask - Skiffin can you help out here?
Has this most amazing video of the mask, and of a radiation treatment session been posted here yet? I found it very comforting to review, and it might be a helpful addition to our Superthread, if the thread accepts videos. Also, I have no idea how to link to a video but it is called "My Radiation Treatment" and is located…
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Prayer request
My husband has a small spot on the upper lobe of his right lung, very suspect on PET. In fact, little doubt that it is cancer. caught early but he has COPD since 2008 (does not require oxygen) and he has A-fib which could be an issue. Normally, they would do a biopsy and then cone shaped removal. We see a Cardiologist for…
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Long day
but GOOD NEWS!!! Mr. NED is hanging around. Of course I had been worrying because of headaches in the last month. I thought I was going to need Phrannie and her horses to come and tie a harness on me to get me down from the ceiling fan. Nothing could be seen by the doctors on the MRI, should get the written report in a few…
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One Year Post Treatment
Hi all! Today March 18, 2014, it has been one year since I completed treatment! It’s been a very long time since my last post, but I do visit daily for encouragement. It is hard to read about those just starting out on their journeys and hearing their stories, but good to see the advice and information given to them is the…